Marcos, 24

I was originally scheduled to be born on Independence Day, but decided to pull what I’ve always deemed the ultimate prank and come into the world on April Fool’s Day at 26 weeks, weighing only 1 Pound, 8 Ounces. Imagine trying to call your family to tell them your first son was born, only not to be taken seriously! As a result of a brain bleed, I developed Post Hemorrhagic Hydrocephalus of Prematurity (PHH). As a child, I grew up hearing stories of my parents spending nights in the NICU for three months after my birth as I gained the strength to go home. My favorite story is of my third Christmas when I became Santa Claus by giving my parents the gift of my first steps.

Over the years, numerous doctors told me that my extraordinary holiday feat wouldn’t last and my strength would deteriorate to the point I would require a wheelchair for life due to Spastic Diplegia (Cerebral Palsy). Luckily, my neurosurgeon at the time referred me to a Physiatrist who treated my severe spasticity with a relatively unknown medicine at the time called Baclofen. The medication is injected, via my abdomen, into my spine relieving my symptoms. Now I can walk short distances with relative ease.

Living with PHH, I thought headaches, shunt revisions, and unexpected night runs to the ER would be the worst of it. The truth is there was a harsher reality. The worst part was facing discrimination and being denied mental health care due to my pre-existing condition. In my early teens, after numerous hospitalizations among other events, the stress of life finally caught up with me and my psychologist put me on a 5150 Psychiatric Hold. I was stuck in the ER for a full 24 hours because not one local or statewide psychiatric hospital in California would accept me as a patient. Hospitals saw my living with a shunt as a liability. I was almost shipped off to the East Coast until a Bay Area hospital took a chance on me, for which I am forever grateful.

As I grew up living through countless nights in the ER, numerous surgeries, and several hospitalizations, one thing became clear to me: my mission in life was to give back to the medical community. That is what led me to the profession of Social Work. I graduated from California State University, Sacramento last year with my Bachelor’s Degree in Social Work. After taking a gap year, I look forward to starting my Master’s Degree Program in the field at San Diego State University this upcoming fall. Ultimately, I would love to work in a Neurological ICU helping patients and their families navigate their hospital stay, while ensuring they have all the necessary services in place for care after being discharged. With my lived experience, nothing would be more fulfilling in a career than acting as a valuable resource to patients, families, and the medical profession.

Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are posted on our website and through social media. Submit your story today!

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

For questions, email: natalia@hydroassoc.org with the subject line “Share Your Story”.

Become a Grassroots Advocate for Hydrocephalus today! Click here to join the Hydrocephalus Action Network.

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